Brian and Ellen’s Story

In the early 1970s, two children were born into two different households, 915 miles apart. These two births had more dissimilarities than they did parallels: One was a girl child, the other a boy; one was well under the average birth weight at two pounds, seven ounces, the other, above average birth weight; one came following a 26-week pregnancy, the other, later than expected.

Baby girl Ellen was a bright child, but there were quirks about her movement patterns that led to a diagnosis of cerebral palsy at age two. Four siblings followed her into the family, all escaping the complications of premature birth that doctors cited as the cause of her disorder.

For most of her first year Ellen wore casts on both legs, and by kindergarten she was reading at a second grade level but couldn’t advance to first grade because she had seven surgeries scheduled for the following year – most of them heel-chord lengthening operations.

By first grade, her parents had returned from Colorado to their home state of Minnesota where Ellen was the only special needs child enrolled in their small church school. Struggling with a leg brace and orthopedic shoe hampered her efforts to keep up with her classmates physically, and she was often carted off campus for speech and physical therapies. Introduce into the equation occasional episodes of spasticity which others sometimes misinterpreted as seizures, and Ellen would gradually develop a sense of separateness that followed her into high school.

In ninth grade, Ellen joined other church school students at Immanuel Lutheran High School in Eau Claire, Wisconsin, but her challenges remained more complex than those of the average adolescent. That year brought an unwanted weight gain and the return of muscle spasms, and anti-spasm medications left her feeling as if she were moving about in a stupor.

Philosophically, Ellen viewed herself as having a mild disability and sensed that she was “cutting a path.” As a typically self-conscious teenager, however, she didn’t always appreciate the character-building opportunities inherent in living with that small hitch in her gait that made it difficult to fit in completely. “I found myself having a few arguments with God,” she remembers, “and praying for someone to come into my life who could truly understand.”

Baby boy Brian was the first of two children born into a middle class family living in a small suburb of Minneapolis. When the twenty-four-month old did not progress as expected, doctors speculated that an umbilical cord accident might have disrupted the flow of oxygen to the motor control centers of the brain for a few critical moments at birth.

Upon learning that her son had moderate to severe cerebral palsy – a condition that would leave him unable to walk and would likely affect his speech – his mother claims “one good cry” before she got on with the business of raising her children.

Confined to a wheelchair, his labored speech belying an IQ well above-average, Brian was bussed to preschool at Courage Rehabilitation and Resource Center with no particular sense of being alienated from the neighborhood children. “I was just excited about the idea of getting on a bus and traveling across town,” he recalls as an adult. For him, this was an opportunity to have fun in a group setting, a supreme adventure.

Kindergarten and first grade provided an introduction to non-adapted classroom settings at locations in Saint Paul, and then finally, relief from long, tedious bus rides as he attended the remainder of elementary school closer to home. When by fourth grade he had only a few friends, all girls, because he wasn’t able to keep up physically with his male classmates, temperate and logical Brian had already accepted that “things are the way the are,” a point of view that serves him well today when he encounters impatience or prejudgment from others.

Still, even this beyond-his-years maturity couldn’t shield Brian from the pain of having former friends turn against him in a taunting campaign as they neared junior high school, as if it were no longer cool to be friends with the “disabled kid.” Although as captain of one adapted High School State Championship soccer team and a floor hockey team he was to demonstrate abilities even he didn’t know he had, the scars from such betrayals were long-healing and the hurt difficult to forgive.

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It is spring of 1992. Ellen enrolls at a local junior college, laying the groundwork for a teaching degree. The preceding fall, Brian had chosen the same institution for his generalist A.A. degree, and the lunchroom on campus provides a social petri dish in which the Master Matchmaker cultures the growth of romantic interest. It is Ellen who first sees the personality spark that attracts her across the room to latch onto Brian’s group of friends. From those casual beginnings, their relationship grows over the next several years as Brian goes on to complete his B.A. in computer science in 1996 and Ellen, her B.S. in teaching in 1997.

Based on their shared love, faith, and empathy for each other’s struggles, these two who had come into the world so far apart join their lives together in marriage in the summer of 1997, and start planning a future together. With Brian well settled into a computer analyst position and Ellen having earned her kindergarten teaching endorsement, in late 2000 they unwittingly climb aboard an emotional roller-coaster that will hold them captive to a long ride.

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It all started with an astounding bit of good news: Ellen was pregnant. But no sooner had they named little Jase than they had to say goodbye to him, after ten weeks of gestation. Soon, the encouraged couple again announced a pregnancy to their respective families, only to lose little Alan to stillbirth in January, 2002. “This was a really rough time,” says Brian. “And then it got worse.” Following a chemical pregnancy with failed implantation of the embryo in the uterus, once again Ellen was carrying a child. Wary but happy, the two took every possible precaution, knowing that the doctors weren’t optimistic about little Seth’s chances for survival. After 21 weeks of pregnancy, they suffered a parent’s greatest heartbreak as they cradled him for his 90 minutes of life and then had to let him return to his Heavenly Father.

With this tragic history of loss came threats to Ellen’s health. “There was a time when we just put the whole issue of children on hold,” she says. When the yearnings resurfaced in February of 2003, Ellen sat down at her computer and typed adoptuskids.org into the search engine. A special needs child seemed a perfect choice for them, “Because we know just a little bit about that subject,” says Brian, with his thumb and forefinger positioned a half-inch apart for emphasis.

They also knew of a number of special needs peers who had been raised in foster care and they wanted to spare another child that future if at all possible. Enter Isaiah. The First time Brian saw a video of the six-year-old at a pre-adoption session, he was transported by paternal feelings. The harsh realities of raising a child with multiple disabilities were used to “flat-out try to scare us,” he recalls, but their hearts had been irrevocably touched and they were ready to confront the barriers. After all, they both knew “just a little bit about that subject,” too.

Isaiah’s personal obstacles are many. Born to developmentally-delayed teenage parents both of whom abused drugs, as a newborn he struggled to thrive physically. He also showed signs of infantile autism, then later cerebral palsy, asthma, seasonal affective disorder, bi-polar disorder, and ADHD. Now, after four foster home placements and two disrupted adoptions, little Isaiah Jermaine Edward would finally find a permanent home with Brian and Ellen. And with two loving, committed parents, special education programs, medication, dietary supplements, and behavioral therapy, he would finally have a real chance at life, as well.

This should be the happy ending to Brian and Ellen’s story. However, this couple who had weathered so many storms in their young lives were in for a few more. Squall number one, a diagnosis of breast cancer for Ellen in January of 2007. Isaiah’s routine and the family’s peace of mind were rattled badly by Mom’s temporary decline, as five months of radiation therapy drained her – physically, emotionally, mentally. With an abundance of prayer, and support from employers, family, and church friends, relief came with the end of successful treatment the following spring.

Relief came, that is, only to be wrenched from them again six months later as Ellen experienced an ugly sort of déjà vu: a second cancerous lump now threatened from the other side of her body, bringing another five months of grueling treatment – only this time with the dread of knowing exactly what was in store. Once again, they leaned on God and each other, and cleared the familiar hurdles before them.

Today Brian and Ellen serenely recount the blessings and gifts in each recollected hardship: their physical trials led them to each other; the troubled pregnancies provided an impetus for Brian to learn to drive; Ellen’s cancer treatment resulted in Brian being able to work from home; Isaiah’s challenges have led them to many helpful discoveries about special needs children. Now, their greatest joys come from small things that others might take for granted. “Isaiah is learning to sign and he actually initiated the table prayer himself a few weeks ago,” Ellen says with a parent’s pleased smile. “That was really neat.”

And another thing that’s really neat? When happy endings are composed by the story’s own main characters.

You both continue to amaze me. Your drive, faith, and courage are an inspiration to all who are watching you live your lives of faith. Thanks for being loving Christian examples for all of us. Sometimes when I hear a member of my family whine about some minor obstacle……….I”ll say, “Let me tell you about this couple that goes to church with us.” I personally don’t know how you do it except that God has given you the ability. Thanks again for being you! Keep being shining stars!
Trudy

Thank you for visiting the site and for your pertinent comments. I have forwarded them on to Brian and Ellen, and I hope you’ll continue to drop in on myrecipesforlife.com and look for weekly or bi-weekly posts.

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Recipe. According to Encarta, "a list of ingredients and instructions for making something." The thesaurus offers the alternate terms, "formula, guidelines, directions, steps, technique."

And what is the "something" we are aiming for here? Simply a life of robust good health in every important area - spiritual, physical, cognitive, and emotional.

To that end we offer inspirational real-life stories about PEOPLE OF FAITH AND COURAGE; menus and cooking directions meant to fuel your creative inclinations and your healthy body in the form of MUSINGS OF A MIDWESTERN FOODIE; and ADVICE FOR LIFEfrom the perspective of those who have lived it to maturity. (Click on the green category tabs at the top of this page to learn more about each section.)

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